How it Began Part Two

Today is really tough, just when I thought things couldn't get worse they hit an all time low. Every time I come home Jacob is in some shape or form fighting for his life. Christmas break he was in and out of the hospital every couple of days and at that time I had a wonderful boyfriend to run to in times of doubt and fear. This time not so much....life is always changing, people coming and going in and out of our lives every day. 

But the one who always remains is God. If I can write that on a blog why do I find myself not as faithful? I feel disgusted to even say that for all that's been given to me. So what I believe it comes down to is the fact that its an innocent life that's being affected. That's the difference, a young, vulnerable, innocent child is going through trials and tribulations that some of us will never face. A four year old has dealt with death at his door more times than I've had the common cold. 

My family and I have been with him through it all. As I reflect back to those times I see the amount of faith and love we all had. We were a team full of strength, hope, and faith.. Right now we are a team full of fear, doubt, stress and some faith. I think the real question here is do we love God enough to trust him with this child's life? Can we let go of all our fears and let God take over completely? That is the single most problem I believe we face. 

So deviating from that thought I should probably explain what is wrong with Jacob currently. He has Prune Belly Syndrome which has a multitude of levels of severity. This affects Jacob in that he doesn't have a strong stomach muscle. This syndrome can lead to all types of malformations and dysfunctions. Luckily we scored high on this one...well I mean compared to some. Anyways, he used to have a mickey button which is a type of feeding tube. It goes straight into the stomach:

http://www.mic-key.com/media/40679/r8201b_mic-key_care_guide_english.pdf

The important concept to remember here is that the mic-key button is easiest on Jacob as well as to care for. In addition what happened was the mic-key button stretched his stoma. He's a four year old and active crawler. When the mic-key button stretched Jacob's tube, his feeding started to leak out of his stomach. He started losing a pound a day, had no stamina, and wasn't smiling anymore. Come to find out he was slowly starving to death because his feedings were leaking out. Fast forward to a month later; they put a new tube in called the GJ tube, while doctors waited for the hole from the mic-key button to heal up. After it healed it would enable them to place a new mic-key button in and continue on feeds. In simpler terms, this new tube would give his stoma time to tighten back up thus allowing the mic-key button to be placed back in. The real problem lies with the GJ tube. The GJ tube is an alternate and temporary tube placed in the jejunum of his small intestine. It is held in by stitches which is where our battle begins. Since Jacob has prune belly syndrome, he doesn't have a well developed stomach muscle to support this tube. The stitches aren't holding which causes tube feed to leak out and him not to get nutrients. Since the stitches won't hold, surgery is not an option. The doctor says that if the stitches currently won't hold, surgery will be inaffective as well. 

Well, theres an experimental surgery done at Boston's Children's Hospital which has had great success. It's a muscle transplant surgery. However, this is very risky. The chances of it not working are significantly high. My mother says that if it were an arm that they were working with it would be a different story but because it's his stomach that there is no guarantee. Not to mention putting him through a major surgery like that without guarantee is cruel and senseless. Which brings us back to square one again, the next option is having him receive feedings through IV's in the hospital for months. To begin with, that's an awful fate for someone who has spent the last 4 years in and out of that place. In addition, with his trac and respiratory needs the chances of him contracting pneumonia from being in bed all that time is extremely high. If he gets pneumonia then there is much more to fear than just the GJ tube. The severity of this situation is quite an issue. It may seem simple in that it is just a feeding tube. But he can't live without tube feeding as we cannot live without food, it's the exact same thing. Medical research is not advanced enough to help him. 

He's a definite fighter I'll give him that but it just doesn't seem fair; all he has been through and now this, he never gets a break. Sometimes, like today I look at him in his bed and just cry. I look at his bright brown eyes and his angelic smile. It's amazing to look at this little boy knowing the pain he feels but doesn't ever complain. Someone who doesn't complain or cry but still is stuck with this fate, I just don't understand. I don't think I will ever understand which makes these challenges harder to grasp. The dreaded and regretful thought of him being happier and not suffering as much in Heaven is a thought I have often. It makes me hug him a little tighter the next day. I'm just too stressed and full of anxiety to go into the greater details of this situation today. Sometime soon I will go full fledge into the reality we all face.